Another one for the folder: "drugs that seem to have similar effect both for #pwMS and #pwME"

Metformin and antihistamines. Rings a bell?

Wild.

I wished we were as advanced for #pwME & #pwMS.

Only a matter of time to realise how many symptoms, triggers, supplements, strategies, lifestyle... etc, we share between #pwMS and #pwME. Probably only a matter of time until we realise that if we ever find a cure for one, it will most certainly be the same path to the cure for the other. 5/

👏 Big thanks to our project partner AIAS Bologna for a successful workshop on "The Changing Face of Care"! Engaging discussions on the future of long-term care, tech, and skills. Together, we’re turning ideas into actionable pathways for change. 🌍✨ #digitalhealth #ProACT #SEUROtools #PwMs

NXT BEta Program Waitlist Program for Newly Diagnosed and High Mobility.

#MS #neurocentrictraining
#FeedForMSFolk #TheMSGym

Very cool new beta program for *high functioning* #pwMS. An array of full or part body 5, 10, 20 and 30 minute workouts - reinforcing good maps, stability, balance and strengthening. Check it out!

themsgym.mykajabi.com/NXt-beta-pro...

As a #PwMS, my fatigue was “due to” #MS. And worsening #balance and #cognitivefatigue.
It was extreme. It also responded to #antivirals #valacyclovir. They didn’t help #motorfatigue - that responded to #neuroplastictraining.

Was it #MS? #EBV? Lots with MS do not have extreme fatigue. 🧵

“Key factor in anoxic neuronal death.”

More on #TRPM7, which unlike #TRPM6, is heavily expressed in #neural cells.

💡

I believe these variants are very likely expressed in some #pwMS as well. Not causative, as spasticity. Do you have #MultipleSclerosis #MS #highbloodpressure #arterialstiffness?

pmc.ncbi.nlm.nih.gov/articles/PMC...

💯‼️ Mind the Science is a great book, highly recommend for #pwms as well as members of the #multiplesclerosis care team.

Very curious to see the results of this trial (we'll have to wait for the study completion which is estimated 18-11-2026) and probably by the end of 2026. Also curious to see if a p2 trial in #pwMS would start later.

W&S

Having had #longcovid AND #MS, and having been on #immunesuppressant meds through #sarscov2 times, I’m seeing in groups a high number of #pwMS blaming their #DMT for symptoms that are more likely due to their past Covid infection. I blamed #Mavenclad for trashing #monocytes. It likely wasn’t.

🎼”And the best paper title award goes to ….” 🎶

#MS #neurorehab #pwMS #neurorehabilatation

Years ago I quoted an Italian researcher saying exercise should be considered a DMT in an MS group. Got a lot of heat. Very cool to see this!

Now. Anyone have full access? :D I need an institution.🙏🏼

We’re running a study about MS and menopause. People with MS helped to shape our research questions and to develop and test our new questionnaire about menopause and MS.

Slide is a quote from Jenny, a person with MS who was involved in the research. She said: “An occupational therapist once told me that she didn’t realise Black people had MS. I would hate to think that the same type of ignorance existed around menopause. It’s important for Black women’s voices to be included in this study”

Slide is a quote from Francine, a person with MS who was involved in the research. She said: “I think this research is really important because menopause can have a big impact on women’s lives. It could really help other people that are going through similar symptoms, and help everybody understand what we are going through as people with MS and menopause.”

Find out more in our new MS Society blog post, written with Maria and Úna who helped to shape the study. There is an image from the blog post which reads: Improving care for people with MS through menopause and beyond”

Our #MS and #menopause @ukmsregister.bsky.social questionnaire will be closing soon - huge thank you to everyone who has taken part so far!

We spoke to some of the #pwMS involved in the study about why research into MS and menopause is so important. See our MS Society blog: tinyurl.com/587h9tez

#MS #diet #microbiome all matters for MS and this is why. #PwMS also show a more limited gut microbiome than the normal population: photo link. As well there is a ton of interest in the complex relationship between genetics and host microbiome.

microbiomejournal.biomedcentral.com/articles/10....

The surveillance phenomenon is a huge benefit to #pwMS. Had a cancer caught early even before #MS diagnosis.

I had a massive relapse post-Covid 2022. If I hadn’t happened to have an MRI 3 weeks prior to Covid, I would have insisted that Covid caused the lesion. It was new but already there.

The image is a slide titled “MS & Menopause”. The slide reads: There is still time to take part in our questionnaire! Find out what people with MS have to say about our ongoing study… There are logos for the UK MS Register and the Centre for Preventive Neurology

We’re running a study with the UK MS Register. We want to find out whether MS gets worse faster after menopause [image of a graph showing a red line getting steeper after a point labelled “menopause”]… and whether the severity of someone’s menopause symptoms can affect their MS.

A quote from Jenny, a person with MS, reading “A huge number of women with MS are now at an age where they are either approaching menopause, going through it, or have already been through it. It will affect a high percentage of us. Taking part in research is about helping others with MS. Sharing is caring”

A quote from Una, a person with MS, reading “By taking part in this study you will be helping to improve the knowledge of medical and nursing staff who advise and support people with MS, but also your own knowledge as a person with MS who might go through menopause. This is really valuable.”

There's still time to take part in our #multiplesclerosis and #menopause questionnaire with @ukmsregister.bsky.social! Help us learn about the impact & experience of menopause for #pwMS

See what pwMS who helped to shape the study have to say about it 👇

Find out more here: tinyurl.com/sja8bbwb

Except in the case of #MS, where symptoms may only look like worsening balance, cognition and falls, and that “lower than” colony count matters. How often are #PwMS refused treatment then go south fast? Too often. 😭

Hi Dr. B.! With your permission, I will add you to my starter pack #MSMindMapping. A collection of great folks here doing research and sharing good information that will move us, #PwMS, forward. Not MS specific - trying to remove silo barriers to research.

Yes. A question …what tests are done when a #pwMS seems to be switching to secondary progressive? Nothing at my clinic.

The hallmark for me was not having actual symptoms to various infections, likely because of exhausted immune system (tied up trying to keep #EBV to a dull roar).

🧵

With your permission, I’ve added your profile to the starter pack #MSMindMapping. A group of folks interested in solving MS or who are doing very applicable research in another silo. Plus some highly motivated #pwMS peeps.

I can remove if you’d prefer. But I hope you’ll stay!

go.bsky.app/MefK81i

Humoral response to EBV is associated with cortical atrophy and lesion burden in patients with MS - PubMed Humoral response to anti-EBV-VCA and -EBNA-1 is associated with more advanced cortical atrophy, accumulation of chronic T1 black holes, and focal white matter lesions in patients with MS.

3/? Perhaps - EBV can be implicated in cortical atrophy. For me? For a cohort of #pwMS?

A humoral response to EBV, perhaps?

pubmed.ncbi.nlm.nih.gov/26770996/

Oh & #MSers & #pwMS please